Fabry Support & Information Group
Supports individuals with Fabry disease through information, advocacy, education, and compassionate care. For fiscal year 2024 it reported $645K in revenue, $608K in expenses, and $732K in net assets.Pt I
- Type
- Public charity (501(c)(3)) · Diseases & Disorders
- Location
- Concordia, MO
- Website
- www.fabry.org
- Filings
- 5 on file (2020–2024)
More identity details & actions ⌄
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Summary of the Filing
Where the work happens
PATIENT MEETINGS-FSIG brings educational and support meetings directly to Fabry patients and families, many of whom face challenges traveling long distances. These meetings provide up-to-date information from medical and industry professionals and offer opportunities for peer support. In 2024, FSIG hosted meetings in multiple U.S.
EXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2024, approximately 150 attendees participated in the conference, which included presentations from leading medical experts.
Website Education
FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2024, the website received 23,400 visits and continued to serve as a trusted source of Fabry-related information.
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Identity & Classification
Governance & Policies
Officers, Directors & Key Employees
Jack Johnson’s $83K as Chief Executive Officer is at the 67th percentile of top reported officer pay among 900 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 1 named individual · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|
| Jack Johnson | $83,200 | $80,600 | $72,400 | $60,970 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Statement of Revenue
Statement of Functional Expenses
Balance Sheet
Financial Metrics
Same NTEE category, revenue band, and state where available. Descriptive — not a grade.
| Metric | This org | Peer median | Percentile |
|---|---|---|---|
| Program ratio | 75% | — | — |
| Overhead ratio | 21% | — | — |
| Fundraising cost ratio | 6% | — | — |
| Revenue growth | 45% | — | — |
| Investment management fee ratio | 0% | — | — |
| Legal fee ratio | 0% | — | — |
| Accounting fee ratio | 2% | — | — |
Straight from the Form 990 — descriptive, not an evaluation. A ratio is hidden when its base is zero or too small to be meaningful; the dollars are always shown.
Grants
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Filings & Schedule Manifest
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Sources
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